NMHMF op-ed on Ryan White inequities (Title II focus)


Dr. Gary A. Puckrein
Executive Director
National Minority Health Month Foundation

The AIDS epidemic first appeared in the United States 25 years ago, and grew to become one of our most serious public health threats.  The epidemic of 2006, however, looks very different, and our national AIDS strategy has been slow to react to the ever changing face of the disease. It is time for that to change.

The gay community knows the pain and devastation that was caused in the 1980s by a slow federal response to AIDS.  It is precisely why we must join together to stop the same suffering from happening again in the small towns and rural communities of the South and the Western states, under an out-of-date Ryan White CARE Act.

Latino Americans and African Americans represent more and more of the newest cases of HIV/AIDS in our country.  Nearly half of all people living with HIV/AIDS in 2004 were African American, and two-thirds of them were women, according to the Centers for Disease Control.  Another 20 percent of the HIV-positive population in 2004 was Latino, and among new cases, the same trends are being seen.  That means 70 percent or more of people living with HIV/AIDS in America are people of color. 

Congress let the CARE Act expire last year, and is only now moving to renew it.  It’s not enough to renew this important program – we must make it better.

The CARE Act was written in 1990 to respond to a problem largely confined to the biggest cities, when no effective treatments for HIV yet existed.  Today, much has changed.  Vital, life-saving treatments are available, but not always accessible.  And HIV/AIDS has moved beyond the large cities into outer regions, especially rural minority communities in the South.

As with much of health care in America, there is a growing inequity in access to Ryan White care and treatment support.  We are seeing alarming shortages, with patients facing waiting lists and enrollment caps in the Ryan White-funded, state- administered AIDS Drug Assistance Program (ADAP) in states without large urban centers, especially in Tennessee and the rest of the South.

Consider that under the Ryan White CARE Act, funding for HIV programs for women of color continues to be primarily centered in big states like California, Texas and New York City.  Places that big also have more state and local funding resources to supplement Ryan White resources. 

But the federal program leaves gaps in care and treatment efforts elsewhere.  Increasingly, HIV/AIDS has shifted to new regions with an increase in new infections among minorities across the south in states like Tennessee, North Carolina, Alabama and Georgia.  The money is not following them fast enough, and unless we fix Ryan White, it won’t be able to.

Southern and western states have HIV patients waiting on lists to receive their drugs from ADAP – these are patients who are uninsured or underinsured, yet do not qualify for Medicaid.  ADAP was designed to help them, and as it is currently structured, these people are falling through the cracks in growing numbers because the funding is not reaching them.  Alabama has over 400 patients waiting for drugs, and North Carolina’s waiting list is the longest in the country – 529 as of December 2005.  Tennessee had to begin cutting the AIDS drug choices it could finance in order to prevent a waiting list, but some patients have developed a resistance to the drugs on the funded list.

If you are HIV positive in Tennessee, and you aren’t sick enough to qualify for Medicaid, you’d better have excellent health insurance or your treatment options will be limited.  This limitation could, quite literally, cost you your life.  Ryan White is a federal partnership with state and local communities, and the federal partner is not delivering for Tennessee or most of the South under the current structure.

The Bush Administration and Congress have taken stop-gap action, such as through the President’s ADAP Initiative (PAI), but these are only interim measures.  We need a more comprehensive solution by reforming the program to ensure that the federal strategy closes gaps.  Ryan White money should follow the caseload, and not continue to flow through old and rigid structures built over a decade ago.

The United States has done an admirable job in our efforts to provide treatment to millions of HIV/AIDS patients in Africa, and the Bush Administration and the U.S. Congress deserve praise for their tremendous leadership in the global AIDS fight.  But unless we address the problems in the Ryan White CARE Act, we will be forgetting our own people here at home, many of whom are people of color in rural Southern communities.  Let’s not see that unfold yet again before our eyes.


About the National Minority Health Month Foundation

Founded as a nonprofit organization in 1998, the National Minority Health Month Foundation was established to strengthen national and local efforts to eliminate the disproportionate burden of premature death and preventable illness in racial and ethnic minorities and other special populations through the use of evidence-based, data-driven initiatives. The Foundation has developed a comprehensive relational data platform for identifying the prevalence of health-status and health-care disparities at the zip-code level. This centralized data warehouse allows the Foundation to house vital statistics; demographic, environmental, claims, prescription-drug, and clinical-laboratory values; health-care access points, and other data. The Foundation is thus able to measure and forecast health status in small geographic areas, evaluate the impact of specific interventions, monitor changes in health outcomes, and serve as a valuable resource for the health-disparities movement.